Advocating for Patients with Rare Disorders – Suzanne Peek, President of the National MALS Foundation
Raise the Line - En podkast av Osmosis from Elsevier - Torsdager
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One night, Suzanne Peek was awoken by her son who thought he was having a heart attack. That began a drawn-out ordeal of misdiagnoses and ER visits until he was properly diagnosed with Median Arcuate Ligament Syndrome, a rare disorder which results from a constriction of blood flow to organs in the upper abdomen. Fortunately, Peeks had an easier time than most navigating our complicated medical system due to many years practicing as a certified massage therapist. As she worked diligently to get her son the appropriate treatment, she formed relationships with others in the MALS community. “Some of these people have had the condition for five years, ten years or longer because it was misdiagnosed,” she tells host Dr. Rishi Desai. She now leads the National MALS Foundation, which seeks to spread awareness among medical professionals about rare disorders. Tune in to hear how patient advocacy groups organize, what COVID has meant for people with rare disorders, and how to mitigate the forces that can hinder an accurate diagnosis.
